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Thursday, September 30, 2010

I finally went today for a massage after a couple of months off. Ok...it hurt. Like...really hurt. But it was like a "hurt so good" hurt. Although, I must admit, at times, it was truly agonizing. It just made me realize how tight my muscles really were. So...I plan on torturing myself lots more. I set up appointments for every 2 weeks. I am back to trying the more holistic approach. I always go back and forth...back and forth. Western medicine...Eastern medicine. Just searching for anything that works. I think my next step is a Chiropracter...again. My massage therapist said my jaw is completely misaligned. Which I already knew and have ignored that fact. But maybe some kind of jaw adjustment will help.

Right now I am in the "honeymoon" phase with my new neurologist. Maybe what we are doing will last this time. I am pessimistic though. Nothing ever lasts. But you know when you first go to a new dr. and the treatment seems to work for awhile? That's the honeymoon phase. What I seem to be in right now.

I have had a few headache free days over the past couple weeks. Usually the pain is pretty unrelenting, so this is good.

Unfortunately my intense "body work" this afternoon sparked a lovely headache and some nausea. All those toxins being released and spread throughout my body is making me not feel so well. But...in the long run, I think it will be worth it!

Sunday, September 19, 2010

1. The illness I live with is: Chronic Headache and Occipital Neuralgia (I still am unsure of exactly what kind of Headache I suffer from). Possibly something autoimmune. Still investigating!

2. I was diagnosed with it in the year: 2003

3. But I had symptoms since: I suffered my first Migraine with Aura in 2003 during the pregnancy of my second son. My Headache became chronic 2 years ago. My rhematoid factor has been positive since 2008.

4. The biggest adjustment I’ve had to make is: Socialization. I have become quite isolated.

5. Most people assume: That the more I do, the more I'll want to do. What people don't realize is the more I do, the more pain I am in, which leaves me even more drained.

6. The hardest part about mornings is: Getting up. I have severe muscle spasms and stiffness, especially in the mornings.

7. My favorite medical TV show is: Mystery Diagnosis. I watch it hoping I will see someone with the same symptoms as me!

8. A gadget I couldn’t live without is: My cell phone.

9. The hardest part about nights is: Staying asleep.

10. Each day I take __ pills & vitamins: Depends on the day. Daily I take 3 preventatives and 3 supplements. Some days I take anti-inflammatories and rescue meds too. Overall...too many meds! I hate it and I am trying to eliminate some!

11. Regarding alternative treatments: I am a huge fan...especially of massage. I am about to try acupuncture again.

12. If I had to choose between an invisible illness or visible I would choose: Neither! But if I had to chose, I'd say invisible. I am too vain for a visible illness!

13. Regarding working and career: I still work full time in my career of choice, however it's a huge struggle. I have put my aspirations of getting my Master's degree on hold.

14. People would be surprised to know: That I am in pain EVERY day.

15. The hardest thing to accept about my new reality has been: Not being able to do everything I want to do. I need alot of downtime.

16. Something I never thought I could do with my illness that I did was: Stay at my job.

17. The commercials about my illness: Is a joke! Everyone who suffers from the pain I do knows that Excedrin Migraine is like eating a tic tac!

18. Something I really miss doing since I was diagnosed is: Going out and having fun!

19. It was really hard to have to give up: My social life.

20. A new hobby I have taken up since my diagnosis is: Blogging!

21. If I could have one day of feeling normal again, I would: Either go out dancing or go to an amusement park and actually ride the rides!

23. One thing people say that gets under my skin is: Take a tylenol, or take a hot bath, or exercise more, or sleep more, or eat healthier....etc...etc...etc. People I have tried it all, and if it were that simple don't you think I'd already be doing it!!!

24. But I love it when people: Acknowledge the fact that what I suffer from is more than just an ordinary headache.

25. My favorite motto, scripture, quote that gets me through tough times is: One day at a time.

26. When someone is diagnosed I’d like to tell them: Honestly??? Oh shit...that sucks! Good luck finding a competant doctor and some relief. That's probably not the right answer, huh???

27. Something that has surprised me about living with an illness is: I have to go with Steph from Headwise on this one...my ability to adapt.

28. The nicest thing someone did for me when I wasn’t feeling well was: There are so many! My boyfriend has been a godsend. There isn't anything he would'nt or has'nt done for me.

29. I’m involved with Invisible Illness Week because: I want people to know there are alot of us out there!

Thursday, September 16, 2010

I am going to keep this post short and sweet, as I am having a not-so-good head day. Although, this new Brookstone shoulder pillow massager thing I bought in Wisconsin is helping a little...along with drugs and ice packs of course. Anyways, I went to see a new neurologist (Dr. K.) today... and he does in fact seem to be a "headache specialist". He seems to know his stuff. Of course, he is completely changing my current plan of care...which is good, because it's not working, but also frustrating because I will most likely be withdrawling again and having to get used to new meds. Unfortunately, he also told me the RFL was a complete waste. Which I kind of already knew too.

Wednesday, September 15, 2010

I have been quite busy since I last wrote. Jesse and I flew to Wisconsin with his parents last Wednesday. We went up for a surprise 60th birthday party for his uncle. As nervous as I get flying, I still love to do it...mainly because I know getting on a plane means I'm going on a vacation and I can forget about reality and responsibility for a while. However, I usually need a vacation from my vacations. We spent everyday shopping and visiting family members. Shopping is very high on my list of priorities...but we did SOOO much walking! We came home Sunday night around midnight. I picked up my boys Monday and spent quality time with them, then worked a 12+ hour shift yesterday. Basically today...I can hardly function. I am exhausted and my head has been on the fritz for days now.

I decided to finally make an appointment with a new neurologist. Supposedly a "headache specialist." I am wary of that title though, as alot of neuros claim to be "headache specialists" and really don't know squat! But, I'm keeping my fingers (and toes) crossed. I go tomorrow at 10am. I also received a letter from Aetna today stating that HCA hospitals are no longer in-network. My last 2 hospitalizations were at an HCA hospital as that is the only place my current neuro has priveledges. Good thing I am making a change. Although, I wasn't sure it was going to be a permanent thing...now it might have to be!

Monday, September 6, 2010

Thank you, Jamie at Chronic Migraine Warrior, for passing on this "lovely" award to me. I appreciate all of you who read my blog and who continue to support me through my journey of figuring out my head, and for all of your words of wisdom! =)

Here are the rules of accepting this award:

-Accept the award and post it to your blog with the name of the person who has granted the award and his or her blog link.

-Pass the award to 15 other blogs that you've newly discovered (if possible).

-Remember to contact the bloggers to let them know they have been chosen for this award.

So I guess I cheated a little...I only chose 9. It's not because I couldn't come up with 15 fabulous blogs, but because I wanted to chose blogs that others didn't already pass this award onto. If you go to my blog list...you can see all the blogs I follow and read faithfully!

Friday, September 3, 2010

I am currently reading this book called "Identical Strangers". It's about a set of identical twin girls, separated at birth and adopted to different families. At the age of 35, they find out about each other and meet. I am loving all the little factoids about twins and the theories of nurture vs. nature. Being an identical twin, I just kind of thought of my sister as "just" a sibling and never really thought too much about it. Obviously in college and all my Science & Psychology classes I learned some twin facts, but now as I read this book, I am truly fascinated. I am realizing I am quite special! Haha.

First before I delve into my main question to you guys out there...I'd like to tell you a little about my sis and I and how we came to be...

My parents married young, at the ages of 18 & 21. We were conceived on their honeymoon. That's their story anyways! =) Well my mother felt as if she was getting way too big...way too fast. She states the doctors all just kept telling her she was having "one big healthy boy". In the 70's they did not do routine ultrasounds, so she never had one despite her concerns. In fact, the doctors told her to stop eating so much and put her on a diet! And guess how much weight she gained...25 lbs. With twins! And they put my petite mother on a diet for being too big. Anyways, at 36 weeks gestation, my parents were standing in our nursery, admiring the room that was about to be filled by "one big healthy boy", when her water broke. After a night of labor...I was born at 10:01 am. So the doctor then tells my mother to bear down to deliver the placenta...and then..."OMG...it's another head!" My mom said all she could do was scream..."I told you...I told you!" And just as if out of a movie, my poor dad passed out cold on the floor! So out came my sister at 10:04 am. We both came into the world weighing and measuring the exact same. 5 lbs. 5 oz. and 17 inches long. Now since we obviously were not "one big healthy boy", we were two tiny, little girls...we had no names. We were "Twin A" and "Twin B" for 3 days. Finally...we became Jessica Kelly and Jennifer Leigh.

The interesting thing about Jen and I is that we are also what they call "mirror- image" twins, who account for 25% of identical twins. Also known as reversed asymmetrical twins, mirror-image twins occur when the fertilized egg splits later than 7 days after conception. In most cases, the reverse asymmetry presents itself in small, obvious ways. Such as I am left handed and Jen is right handed. However, some identical twins may also show reversals in dental features, fingerprints and facial features. In the most dramatic form, the internal organs of one twin are reversed, with the heart being on the right side of the body.

Identical (monozygotic) twins are clones of nature, each descended from a symmetrical splitting of a single fertilized egg into cells that contain the identical sequence of billions of even tinier DNA molecules. Identical twins share 100% of their genes.

That being said, my question, and the question of most people I know is...if Jen and I are exact genetic replicas of each other, why is it that I suffer from this debilitating neurological disease and she doesn't???

Now to somewhat anwer my own question...I did some research. Identical twins are very likely to share Migraine Disease indicating a strong genetic component, however, the disease is clearly not caused by a single genetic mutation; rather a person becomes susceptible by inheriting mutations in a number of genes, each probably making a small contribution. Nongenetic components operate as well, because even identical twins are "discordant" for the disorder; sometimes one twin will suffer from Migraine, and the other will not.

Interesting.

I am extremely thankful that my best friend, my "clone", does not suffer from the hell of this disease...but...WHY am I the one who got it?!?!?

Thursday, September 2, 2010

Life is overwhelming. Simple as that. I don't know how else to describe this feeling I have everyday. It's quite ridiculous. I don't do more than most other normal people. Yet...I feel so bogged down with just the basic activities of daily living. I haven't even been able to muster the strength to log onto my computer. All I wanna do is lay down. I don't feel depressed, just sooo tired all day...everyday. Even though I long to sleep 24 hours a day...I don't. I have managed to be very productive. More so than I have been in months. Maybe that's why I feel wiped out. I tried to take things slowly...but in my life, that's not an option. Gotta jump back in...full force. I am now back to full time status at work. Even though that means only working 3 days a week...they are 12+ hours a day of constantly being on my feet and running around like a chicken with my head cut off! Since I have been back, I have been "baby nurse" every shift. Which consists of going to every single delivery and "catching" all the babies and doing all their care. While that's my favorite part of my job...it gets super busy as baby nurse! I have had 8 babies a day the last 2 shifts I've worked. It's not too bad if the babies come out good...it's when they come out bad that it gets hectic. Then I fall behind. I am very systematic and organized and one little blip throws me out of wack. Although, while I am at work, I handle mostly every situation with confidence and am able to shift gears quite rapidly...it's when I get home that I crash. I guess every nurse can attest to that.

In addition...I am also back to being part of our Perinatal Loss Program. And tonight...I run my first support group on my own! Yikes! When I was asked, I just couldn't say no! Having had 2 losses of my own, I was compelled to be a part of this team. I feel I have a special connection with these mothers who lose their babies and as morbid as it may sound, I enjoy taking care of these quiet little angels and giving them the best care they could possibly have for their short time here on earth. Those few hours those families have with their stillborn babies are the only moments they will ever experience with their son or daughter. We spend precious moments bathing the babies, taking photos, clipping locks of hair, footprinting them and watching as the parents cry and hug and kiss their sweet angels. Its heartbreaking, but I know we are doing a good thing and providing a special service to these families.

More stress has also come my way since the boys have gone back to school. I spend a minimum of an hour each afternoon sitting in car rider lines picking them up from school. I just read, so I guess it's not that awful. It's just getting my ass motivated to get out of the house! Another thing...the homework! Oh the drama of homework! And I say drama...because inevitably someone always ends up yelling and in tears while doing homework...and it's usually me! I claim to have no patience what-so-ever. Funny since I am a mother and a nurse! Last night I helped Brendan with his homework for 2 1/2 hrs! He is in middle school for goodness sake! He gets more homework than I did in college! He is also in advanced math...I don't remember half that stuff! So while he is learning...so am I.

On the headache front, I have been ok. So far this week I am good. Only mild symptoms. I did practically knock myself out at work on Tuesday though. Not so good. I stood up from washing my hands in a patients' room and banged my head on the corner of the television. I instantly saw complete whiteness (weird it wasn't darkness) and fell backwards into the arms of one of my co-workers. So needless to say, I was a little dazed and confused after that. Other than a big knot on my head, I am fine now.

While this week has been good...last week sucked. When I look at my headache log, last week was all moderate to severe symptoms. That being said, I did make the first step and called Michigan Head Pain and Neurological Institute (MHNI). I am waiting for a nurse to call back to get my medical history, then I will make an appointment to go. I cannot live my life so up and down. A big trigger for me is stress and anxiety...and I don't foresee my life slowing down anytime soon...so I need help. Dr. B. mentioned going in and lesioning my c-1 and c-2 and has also mentioned an occipital nerve stimulator, but I'd like to see if I can go to MHNI and see what they say.

On this so-called CTD front, I think I might be having some kind of flare-up. My face is so tight, dry, itchy and red...I can't stand it! As a former aesthetician, I take impeccable care of my skin. I have never experienced this before and it is driving me nuts! My tremors are still there and annoying, and my thighs are so achey down to the bone, but I am dealing with it. As all of us in pain have to do.